Steve:

 

In August 2015 through April 2016, the Council (ICDD) collaborated with the UCEDD and the Idaho Department of Health and Welfare (IDHW) on a statewide face to face study: “Choice and Community: Seeking the Voice of Adults with Developmental Disabilities”. The purpose of the study was to identify perceptions of adults with I/DD receiving HCB services and to learn the extent to which individuals were integrated into the community, had choices, individual rights, involvement in their planning and autonomy within their residence.

 

The study was designed to provide the IDHW with information about aspects of the new CMS HCBS rules before implementation in our state July 1, 2016. Information gathered provided a baseline of information from participant’s statewide. A follow-up study will be conducted in 2019, three years post implementation, to learn if there are changes in the perceptions of the same respondents as a result of rules implementation. The study intentionally involved all ranges of support needed for adults served within the DD waiver – respondents were as young as 18 and as old as 68.  Key Findings of the study included:

1.   Perceptions of adult recipients of HCBS or their guardians indicate they had adequate choice within their living situations; (this perception only exists because individuals in Idaho are not presented the entire array of potential options. Their perception indicates the limited choice they are presented as “having adequate choice.” Does that makes sense?)

 

2.   The majority of recipients who had some kind of restriction related to what they could eat or when they could watch television did not have that restriction listed on their service plan; 

 

3.   Recipients of HCBS were not employed. They did not have a work or pre-vocational goal listed on their plan;

 

4.   The person centered planning process resulted in the development of goals that did not reflect a recipient’s strengths and preferences;

 

5. The person centered planning process did not accommodate the diversity of recipients of HCBS.

 

The baseline of information provided a starting point for the work needed in Idaho in order to successfully implement the new rules. The Council used information identified in the study to determine goals in the five year plan. As a result of this study, the ICDD will be working primarily on the improvement of person centered planning in our state, assisting adults to learn how to actively participate in meaningful ways in their planning meetings, identifying strengths of individuals and redirecting the focus on those strengths vs. on deficits, and working in community settings at a competitive wage.

 

I share this with you because ICDD felt strongly that we needed a clear understanding of what was really happening from the people who experience HCB services in order to create a plan forward on quality implementation. While the information we collected was of no surprise to us, it was validating about what we thought was taking place. Below is a summary of some of the additional issues identified that compelled the Council to work in these areas.

 

Responses about the recipient’s involvement in their plan included: “When I’m at (agency name) I attend the meeting but they don’t really tell me what my plans are. They just tell me, ‘This is what’s going to happen’. Respondents were asked a follow up question about how the adult recipient participated in the meeting. Answers indicated that the process did not appear to be adapted for recipients who had various support needs. For example, adjusting questions for language level, time to process information, or the experience of the recipient. One young man said, “Yes, I don’t usually pay attention to those. I usually nod off because they are using a bunch of big words that I’ll never understand even if I tried. I go and usually later on have my staff explain it to me in a non-fast paced way because usually they’re doing it at a fast pace and I can’t keep up.”  The results of the study indicate that the typical format of planning meetings included gathering information by asking questions and subsequently having recipients make choices about their goals. One challenge in conducting meetings using a verbal format is that people who have a range of disabilities and support levels also vary in how they understand and process information.

A document titled, “Person Centered Planning Process and Plan Requirements” is distributed by the IDHW to inform people about the federal requirements for a person centered plan. The document includes the HCBS rule language and states that a plan must “reflect the individual’s strengths and preferences.” To discover how this requirement was currently being met, the study included a question about strengths and preferences.  Only one person out of the 112 recipients reported they were asked about their strengths and preferences during the person centered planning process. There was a pattern across the state on the topic of strengths and preferences. Professionals, individuals, or guardians did not appear to understand why the questions were being asked or how they might be used to develop a plan. The interpretation of a person’s “strengths” from both the professional and family perspective seemed to be defined as an update on how a person was performing on a program rather than reflecting the abilities a person has that could be used to develop goals on a plan. For example, one young man liked taking pictures and volunteers at the library and food pantry in his community. “He takes pictures all the time and sometimes the local newspaper will publish them,” said his guardian, “he does pictures for the county fair and so he’s got ribbons and stuff in there for his own pictures.” However, the goals documented on the young man’s service plan include “volunteer and make sure he can fill out a timesheet, as well as talking with complete words and sentences.”

Themes across plans indicated that 25% of people in the study had a “budgeting” or “learning to manage money” goal. Other popular goals included hygiene, cooking, cleaning, safety, living a healthy life, and meal planning. Follow-up questions were included regarding work and pre-vocational goals. Only two people interviewed had a work goal on their plan and no respondent had a “pre-vocational” goal on their plan in any region of the state. In seemed that ‘a job’ was interpreted as traditional, 40-hour per week employment rather than looking at customizing work experiences to fit the abilities and contributions of the individual. The themes across the state revealed that goals were developed from a more deficit-based perspective “things I need to work on” or “things I’m not good at” rather than reflecting a recipient’s strengths and preferences to develop a plan.

 

Goals were also developed based on assessment results that were interpreted as skills that people “needed to learn” and seemed to be service activities that were not necessarily leading to an outcome. For example, a person might have a goal on their plan to fill out a time sheet but did not have a job or a pre-vocational goal. People who had more complex disabilities and were designated at the extensive and pervasive levels of support typically had plans with goals that reflected low expectations. People were simply “being taken care of” with little recognition of competency or active participation in work and community activities. The overall sense was that people, both professionals and guardians, did not think about or know how to customize plans to create future outcomes for people at various support levels. It became apparent as the study progressed that the process of planning services for an individual was the same no matter the level of support needed.

 

I hope this is helpful. Let me know if you have any questions about what I have sent.

 

Best wishes and have a great week post 5 Year Plan submission!